We are so excited to be diving into #invisiblediseaseweek with one of our Patient Advisory Board Members - Ashley. Ashley can you start with an intro so that our readers know who you are?
Hi, my name is Ashley and I am a 34 year old mixed race woman who was born and raised in Southwestern Ontario. I have a passion for music, culture, traveling and spending time with friends and family (Quality Time is my love language).
At the age of 11 years old, I got my first period. Right from the beginning my periods were heavy and painful and every trip to my family doctor ended with a variation of ‘you're a female and this pain is normal, so deal with it’. I knew it wasn't normal; my mom never had painful periods and neither did some of my friends. Along with the heavy bleeding and severe cramping while on my period and in between, I later began experiencing recurring bacterial vaginosis infections, urinary tract infections and yeast infections - all of which my family doctor at the time 'blamed' me for, once I became sexually active. I repeatedly asked to see a specialist and was turned down time and time again.
At the age of 24 I moved to Toronto, Ontario to pursue my career goals and in search of answers to my pain. I changed family doctors and this is when things started to change for me. I had a doctor who listened to my pain and referred me to my first ever gynecologist and things quickly moved along. After months of bloodwork, ultrasounds and physical exams coming back with no answers, I was referred to my gynecological surgeon who performed an exploratory laparoscopy that discovered Stage 4 Endometriosis. At the age of 28, after 17 years of severe pain I finally had a diagnosis. 5 years later, after more extreme pain, bleeding episodes and multiple tests, I was diagnosed with Adenomyosis via transvaginal ultrasound.
“When I received my Adenomyosis diagnosis however, I was told by the doctor that it is very common for people with Endometriosis to develop Adenomyosis. ”
My gosh. Your story is devastating, heroic and - while unique - so similar to others who have fought for a diagnosis. Can you describe what your pain feels like? Maybe untie what endo feels like versus adeno, for those who are trying to get a diagnosis like yourself?
My Endometriosis pain varies. Sometimes I experience a swollen stomach (Endo belly), where it feels like I have been pumped full of a nauseating gas putting pressure on all my organs. Sharp stabbing pains in my left (or right) ovary and /or lower abdomen/pelvic region. Burning sensation that engulfs my whole torso and a squeezing and pinching feeling specifically when I am having cramping.
Adenomyosis is sometimes harder to identify or differentiate from Endometriosis pain, however, it was discovered and diagnosed because I was having unexplainable heavy and prolonged bleeding as well as severe cramping between periods.
As far as being able to differentiate between an endo and adeno flare, I find it difficult to determine strictly on pain. If I am clearly not in the menses phase of my cycle and am having abnormal/prolonged bleeding and pain then I typically assume it's the Adeno. The adeno diagnosis is still new for me (diagnosed in 2020) and I continue to educate myself on both!
Did any of your doctors tell you that you have X because it’s more prevalent in women with Y? Just wondering if your doctors have linked the adeno and endo.
For my endometriosis diagnosis I do not recall being advised of specific reasons or links and at the time I was not aware of biological family members who had personal experiences with it. When I received my Adenomyosis diagnosis however, I was told by the doctor that it is very common for people with Endometriosis to develop Adenomyosis.
What have you found to be helpful for pain management?
I have been fortunate to have had periods of time where I have had significantly reduced and/or low pain, though it has never been long term. When I was experiencing these breaks from pain I was on a combination of medications to either put me into a medical menopause, or hormonal medication (birth control) that was strong enough to halt my period. However, each time I get my hopes up of possibly having the pain under control my body stops responding to the medication.
What I currently do to help manage pain is to try and get ahead of it, if possible, by taking anti-inflammatories, doing yoga/stretching, drinking lots of fluids and keeping my hot water bottle nearby.
When I wake up in the middle of the night in extreme pain there is very little I can do to help and oftentimes require the assistance of someone else to help me get through the flare; at times I've ended up in the ER.
Real talk for a second. Let’s talk about being biracial. Do you think that impacted how you’ve been treated in the past?
I do think that being multiracial has impacted how I have been treated in the past, especially when I was younger and living outside of the GTA. Although I have never experienced any blatant discrimination from a medical professional, I do believe that there have likely been occasions where either unconscious or implicit bias from specific healthcare providers impeded my ability to receive proper treatment.
When I became sexually active and had pain or any type of infection I always left my appointments feeling like I had done something wrong or that I deserved the pain I was in. Never once was I ever referred to a gynecologist. I didn't realize that this was not normal until I relocated to a more multicultural area and changed family doctors and finally started to feel like I was seen or heard.
Do you deal with any other pain that you think might not be related to adeno or endo?
I deal with other types of pain that have never been directly linked to Endometriosis or Adenomyosis by a medical professional, such as: arthritic pain & swelling in some of my joints, carpal tunnel in both wrists, sciatic pain and gastrointestinal issues (ie acid reflux). I recently had a LEEP procedure done to remove high-grade precancerous cells from my cervix, which also was not linked to either diagnosis.
You are a hero! Your story will resonate with so many others out there who are still fighting for a diagnosis or who feel alone right now. What would you tell your younger self about pain management?
What I would tell my younger self about pain management would be to be consistent and regimented with taking pain medication at the first sign of pain and to be conscious of my diet to reduce the intake of inflammatory foods. Lastly, I would encourage myself to not give up and to continue to advocate for myself until someone takes my pain seriously.